Monthly Archives: June 2018


[I wrote this as part of the last post earlier this week, and realized it was really a whole other thing. I’m wordy enough without meshing stuff together like that. So I broke it up.

For fun, here are more pictures of the fence. Chris designed everything: metal everywhere except for street side, where he has the wood running horizontal. Becky made this cool gate today! And I had completely forgotten that my brother-in-law, Jeff, worked on it too when they were in town a month ago.]

A lot of things are changing in big ways right now. There are still a lot of projects going on around our house, and lots more on the list. Mom will be moved in soon. I don’t think we’ll really be able to step back and look at it all for a little while longer. We’re building something, we have been for a long time.

Chris and I had marriage counseling a few years ago as part of the process of me becoming Catholic. We did some compatibility and personality testing, and the priest told us that what he saw on paper was a lot of hard work already put in. We’d been to counseling before 😉 and all that work, through the years, is worth it. It’s worth it to put more in now and in the future.

My mom and my brother and I (and really Chris and my sister-in-law Sarah, too) have created patterns together of support and kindness and really taking care of each other. We work through things. We like each other still. And really I could go all the way back to my mom focusing on working through our interpersonal issues with us growing up, and my parents putting hard work in on their marriage through the years. Or let’s go back to Dad and his brothers, and also their cousins, and the vows they made to not let things come before people. The intense love they still have for each other. We’re building on a pretty strong foundation that a lot of work, and a few miracles have gone into.

On Saturday I got really sad, like a heavy sadness —it felt like a weighted blanket of sadness. I started thinking about my dad, which now pulls me back to old memories, and just that feeling of being with him and who he was. I know he would approve of the decisions we’re making, I know he’d be proud of how we love each other.

I thought again of this last year carrying so much grace and so much pain in it. And I know beyond any doubt, that if my dad could have known what was happening and asked for one thing, he would have wanted the chance to repair the damage caused by the diseases, to set as many things right as possible.

And every single time he was in his right mind for that whole year, he was focused on making sure that I knew I was loved, and seen, and that he was proud of me, he was focused on making sure Mom knew these things, and also that she knew he wanted to take care of her even if he couldn’t, he was focused on connecting with Michael however he could, and doing projects, and showing love, and being his dad. There was an urgency inside of him at times, as he knew he’d be pulled away from us again. He told me to remember things as he said them to me, he told me to save certain text messages.

It may sound dramatic, but this was our truth, and I heard it a lot from him, “Whatever happens, I love you, I love you so much, remember.” It was so painful at the time, because he’d disappear. Only now am I beginning to let those moments really roll over me.

Within all this on Saturday, I realized that I’m not scared of being like my dad anymore. I’m not. I’m sobbing now, because writing this is breaking something inside of me. It’s not lost on me that I could end up in a similar situation to him. It was good in the past to realize that I’m not him no matter how similar things end up. But here now, I see that if I could guarantee one thing through whatever comes, it’s that my family would KNOW how much I love them, and appreciate them, and am proud of them, how beautiful they are to me. That this would be a tangible thing for them to hold on to. Because I’m holding onto my dad’s love for me. A saving help in trouble, and chaos. And a foundation under my feet to build on.


All The Changes

Two days before Dad died, I got a preliminary diagnosis. I have EDS with the secondary condition of POTS. There may be other secondary conditions. I’m not ruling out a little autoimmune mischief, but let’s keep it simple if we can. There’s more precise DNA testing coming, but I’ve learned not to get too wound up —it might not show a lot.

What I do know is that I’ve been managing an actual real condition my entire life, and that I’m pretty good at it, actually. I was climbing a mountain in my 30s with a 40lb kid on my back just a year ago (yeah, I’m going to keep holding on to that). I can see how strong I am now, and how I’ve loved my body and kept it moving. So, that’s a happy spin. I’m working on various ways to get back some stamina. And you’d be surprised what I can still do (just not so much when I’m on my feet).

Now that that’s out of the way, Mom’s moving in! There were 3 main reasons. Her monthly expenses with Dad in the nursing home were not budget sustainable. My bad health days at home were frequent enough and debilitating to our family life, and she wanted to take up some slack for us. #1 reason: she didn’t want to be a homeowner or live alone anymore. And that’s what it really all came down to when we made this decision in February and March.


It’s hard to leave your things, and your space. We talked through various things she really didn’t care about letting go of. The only thing she was sad about losing were her grandmother’s dishes. I explained how we DON’T get rid of dishes, and they would be coming, and they’d have a home here. I thought she’d then have other things she really wanted to bring with her. But no, just the dishes. I love my mom.

She sold her house, and our contractor started to convert the garage into a bedroom for her. And then Dad went into the hospital and we found out he wasn’t going to bounce back. We had already sold her house, and now she didn’t have to. But if you look back at the #1 reason, she was just as happy to move.

The skilled workers have been busy. It definitely doesn’t look like a garage anymore, and we have a new huge driveway. They just finished her floor yesterday!

Chris (and his dad, and his mom, and my brother, and Jack a little) is rebuilding the fence. Mom’s room is coming along beautifully now. They just finished the floor yesterday! There will be roofers here either the end of this week, or early next week. Oh, and Solatubes are coming…

Last week Jack had Keeper Camp at the Heard Museum (he LOVED it!).


His swim lessons started this week. Next week he and Bear have a local little enrichment camp (Dinosaurs, woodworking, pottery, theater, more stuff I can’t remember). And the children are all three in a musical production called A Midsummer Night’s Rock at Read Play Love in Dallas this weekend. In fact, Mom and I were up late finishing costumes last night.


We may have overloaded ourselves a little. But with all good things, right?

Last year my dear friend, Sarah M. gave me a coloring sheet. I ran across it right after Dad died. There are so many feelings right now: relief, guilt, grief. It’s normal. I decided it was time to color. I got a little bit in, and my hand started swelling, and my arm and shoulder couldn’t take anymore. I remembered why I don’t color, it’s an old problem, and turns out related to EDS. Jack came in and saw it, and exactly as I figured, he offered to finish it.


He LOVES drawing and coloring. He had gotten a box of cards with Psalms on them from a friend. And several weeks ago, he colored this for Mom.




I had a dream last night, which I mostly can’t remember. The hazy upshot: once again we had only thought things with dad were settled, and whatever had just happened in the dream (him coming back to life? more and new medical issues? a demanded change in his living situation? I can’t remember…) meant I was going to have to start brainstorming, troubleshooting, solving things again. And my reaction to this in the dream was simple: I was steeling myself for the fight.

The worst day of my life, so far, is the day I signed my dad into a nursing home. I’ve never before or since had the experience of not being able to physically get out of bed because of emotional distress, but the day after we got dad to the nursing home, I was supposed to go to work (I do occasional bookkeeping outside the home aside from my MIL’s business). It took me hours to get up; I was so late (luckily they were understanding). Moving slowly, tears just kind of falling randomly the whole day (they put up with that, too—kindness). In fact, that went on for a while, the crying. That was in December 2016, and I think it was March or April 2017 when I was talking to a friend, saying I was doing better, and Jack said, “Yeah Mom, you’re not sobbing all the time anymore.” Reality check—I honestly didn’t think that I had been that dramatic about it, but your kids know, and they don’t mind saying it.

Whatever I have gone through, multiply that by at least 100, and we might be able to grasp a little of what my mother has endured. Six, maybe eight years. When she finally really let Michael and I in, and allowed us to take over some of the responsibility, it was teetering on too late. I don’t think I’m ready to talk publicly about the gritty details. The situation had become dangerous in many ways.

We worked with a gradually downward-progressing situation the fall of 2016. From truly awful, to worse, to worse again. Until finally we thought he was dying, and Michael and I had persuaded Mom to stop the futile effort of trying to keep him home. It had become physically impossible. Let me just say, it was impossible before that. Mom would later describe it like this: their life was the frog in a pot of cold water, and slowly but surely, they were brought to a rolling boil.

There are things worse than dying.

Dad knew some of those things intimately.

I’m going to briefly touch on this here, because if you don’t know what happened when we put him in the nursing home, it’s really hard to explain what I feel now, being able to express myself here.

In the weeks leading up to the nursing home the dementia became too intense to describe, and with it came tiny moments of bizarre clarity. He came back. My dad. Sometimes I would be a child again to him, sometimes a teenager, or just married; he was very confused, but he was my dad again, and his eyes changed, his tone of voice changed during these brief times.

And then, he was just really gone, and physically could hardly move (his Parkinson’s maybe added in?). It took multiple hospital trips, and an act of God (also acts of courage by my brother, and absolute support and endurance from my mom, and also my uncle) to get him to the nursing home.

Within days of being there, he became better than he had been in years. Was it the environment? Consistency of medication? Over the next weeks and months we found that he would return to us, only even more intensely, and then dip away again. His memory was totally chaotic, with no memory of what had happened at home, spotty otherwise, but his eyes would be different, his face was different, he totally trusted us, and was grateful and understanding. These moments might last a few days, or only a few hours. I began to see it as torture for him in some ways. Sometimes it was healing. I had lost myself, and somehow his presence was restoring parts of my identity. Then he’d slip away, and I couldn’t ever seem to prepare myself for that part.

One of the first times I really dealt with his full-on return, I had gone up to the nursing home by myself, taking care of things, and spending a little time. And I remember thinking, “this is what it would feel like to have your loved one come back from the dead after six years.” It was like being ripped in two. The pain was so intense, it was physical. I wanted him back so bad, but I had not been allowed to feel that (that’s what dementia does). Looking in his eyes broke me. We had all been good about hiding emotions around him (and also not around him), but tears started rolling down my cheeks. I just hugged him. Hard. I left that day balling across the parking lot. Wondering “WHY?” on so many levels.

I am so sad, I’m crying little bits, here and there, even last night putting Bear to bed, and today a few times so far. Missing my daddy, missing him from 10 years ago, missing the bits of painful perfection we had with each other this last year and a half, missing him enjoying my kids, and vice versa. This hurts, and it will hurt more. But right now, I don’t need to steel myself for anything else. I need to start relaxing my gut. This pain is blessed to me. I needed it, I needed permission to feel it. To be able to even say anything about it. And this time, losing him, I know what to hang on to. I know how not to lose him. He is a part of me.